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To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Abdominal and breathing exercises for FSHD
Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. We’re excited to launch Feeling Fit with FSHD, our new Gathering Place Zoom group. So many of the questions we get from the FSHD community are about exercise and physical therapy, and…
$3.4 million to speed us on our journey (Part 3)
The foundations on which drug development happens “Infrastructure is basic physical and organizational structures…needed for the operation of a society or enterprise.” —Oxford Dictionary In a rare condition like FSHD, it’s unlikely for any one research center to be able to…
Upcoming Events
FSHD Radio – Giving Tuesday Radiothon
Facebook LiveTim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 29th, we will celebrate with an all-day Radiothon event via Facebook Live! FSHD Radio host, Tim Hollenback, will host guests non-stop from 11am-8pm Eastern/8am-5pm Pacific on Facebook@FSHDSociety....
CarePartner Hour: Asking for outside help
Zoom Virtual Meeting8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month: How do we decide when/if we need outside help either part time or live-in? It's a big step and not everyone in the family be on the same page. Are you approaching this decision point or in...
Women on Wellness: On Mattering
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a woman, while living with the challenges of FSHD. We will also discuss depression, the potential high prevalence in individuals with chronic diseases -identifying signs and symptoms,...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.